My LDN success :D

[Mark. M]

Hi everyone,

I have been lurking on this forum for a long time, and I thought I owed it to you guys to tell you the success i've had with LDN.

I've been diagnosed with Crohn's Disease for 7 years now. In that time I have had perianal abscess after perianal abscess, along with the fistulisation that entails. I have been on pred, 6-mp, azathioprine and infliximaib. Infliximaib worked reasonably well for me, but being an immunosuppresant it left the door open to the abscesses growing bigger than ever (My record was one a few inches up, that was about the size of my fist on the CT scan).

Any way, all these repeated abscesses eventually resulted in me having an extended stay in hospital last Christmas, and coming out with a colostomy. I was obviously quite upset by this, but life goes on. They said it could be reversed, but I will probably just leave it now that i'm used to it.

During this time I couldn't be on any of my normal immunosuppresants, so I decided "what the hell, i'll give this LDN that 'Kev' swears by a go, what do I have to lose?" I asked my doctor to prescribe me some, he said no - there wasn't enough supporting evidence for this. I went online and ordered some for myself. I jumped straight into 4.5mgs per day.

Starting out was pretty awful. It felt remarkably like withdrawing from opiates (which i've had to do a few times after extended waits for abscess drainage). This went on for a couple of months, with little positive effect on my disease, but I persevered. Eventually the feeling of mild withdrawals abated. Within 3 months, I was feeling great, and I had begun lifting weights a few times a week. I had been advised not to lift weights either, due to the risk of hernia from my colostomy. I started off light, and kept on lifting and lifting, and now on certain lifts I am well in excess of 100kg - absorbing my foods properly has helped my muscle building a treat.

I also started a diet called Intermittent Fasting, which is very compatible with my Crohn's Disease (I don't know about anyone else). Basically, this involves not eating breakfast, which you get used to in the first week. You eat your daily calorific allowance in an 8 hour window, which I begin after my workout. To date i've lost roughly 2.5-3 stone of fat, and put on 0.5-1 stone of muscle.

A few weeks ago I went for my first scope in years. The results were astounding, considering that my doctor believed LDN was a total farce. Going through my colon there was little evidence of the fistulas that were before (although i'm sure they are still present). There was very very mild inflammation in a few sections of the bowel, and a few little superficial ulcers. The doctor was chuffed with my progress! He still wants me to go on an immunosuppresant, but I am loathe to rock the boat when my disease appears to be in almost total remission.

Here is a tl;dr of what I did, and take in a day:
1) Multivitamin
2) Fish oil - Enough to get 1.8 grams of EPA and 1.5 grams of DHA.
3) BCAAs
4) LDN


I would like to thank all of you for putting up your stories and advice with LDN, especially Kev who deserves a special mention for being such a strong advocate for this amazing medicine. Exercise+LDN+Omega 3 has made me feel like I no longer have crohn's any more. If anyone has any questions i'll be glad to answer them:thumleft:

 

[Kev]

Hey Mark

Glad to hear of your success. No thanks is necessary (although it is greatly appreciated). One point you made that I like to stress to everyone... if you find something that works, (no matter what others might say or think).. stick with it. In battling this disease, if you come up with a strategy that succeeds, you don't need to apologize, explain, whatever. And for heavens sake, don't rock the boat. What works for you is what works for you. "There isn't enough supporting evidence".. or "the study was flawed"... these aren't reasons to change/stop what you are doing. These are Dr speak for there isn't enough material here to cover my ass so I can't help you save yours.

 

[D Bergy]

I can't add anything other than to agree 100% with Kev, and hope this is the long term treatment that keeps you more or less normal.

I am really happy you are doing well on the LDN.

I have a couple of questions.

What is BCAAs?

Do you use liquid Natrexone and dilute it, or what form do you get it in?

Thank you.

Dan

 

[KatyBuckeye]

I'm glad to hear of your success using LDN. I just recently started LDN and I noticed an initial improvement with my joint pain. I'm really hopeful that it will also help with other remaining symptoms that my diet hasn't yet fixed.

I also purchase the LDN from an online site. How do you explain to your GI about how you get your LDN? I haven't mentioned it to mine yet, after he previously refused to prescribe it.

 

[Moe.]

Hey Mark
Glad to hear it works. Been trying to get my hands on it. Could you please let me know where I can buy this online.
Thanks heaps

 

[Mark. M]

Hello everyone,

D. Bergy - BCAAs are branch chain amino acids, that I take primarily for muscle building purposes. I'm not sure if they help crohn's or not, but they are a protein packed liquid drink that is easy on the gut, and they've certainly helped my exercise recovery! Also, I buy my naltrexone in tablet form, then put 44 ml of water in a pill bottle with one pill and let it dissolve over the course of an hour or so, then shake it up and use a syringe to measure 4 ml each day.

Katy - I just told my GI that I bought it for myself online. He just found it mildly amusing that I would do such a thing. He was very interested in me guinea pigging myself so that he could tell other patients though, but like Kev says he doesn't want to put his backside on the line by prescribing it himself. Are you also supplementing with high does omega 3s for the joint pain? I also get skin complaints that are linked to my crohn's disease activity index, and it has made my skin go super smooth.

Moe - I'm not sure if we're allowed to say where we buy our meds online?

I should probably add that before I was on LDN, apart from the perianal disease I also had disease present in my large bowel, small bowel and the bit the connects the 2 bowels together, so it was fairly extensive.